RPD121 - Palliative Care Utilization and 30-day Mortality Outcomes in Adults With Vaso-occlusive Complications of HbSS

Key Message : Palliative care (PC) has demonstrated benefits across serious illnesses but remains underutilized in patients with sickle cell anemia, particularly among minority populations disproportionately burdened by the disease. Timely, equitable PC integration may likely be essential in enhancing quality of life and closing gaps in compassionate care for this vulnerable population.

Abstract:

Background: Sickle cell anemia (HbSS) is a severe hemoglobinopathy characterized by recurrent vaso-occlusive episodes and progressive organ dysfunction, often leading to high morbidity and premature mortality (1). Large-scale, real-world data on palliative care (PC) utilization and mortality outcomes remains limited in adults with vaso-occlusive complications of HbSS.

Methods: We conducted a retrospective cohort study using TriNetX Research Network, which comprises 105 healthcare organizations. Adults (≥18 years) with HbSS and vaso-occlusive complications were stratified by presence or absence of a documented PC encounter using ICD-10-CM diagnosis codes. Non-HbSS genotypes and adults without vaso-occlusive complications were excluded. Baseline population characteristics were compared and 1:1 propensity score matching adjusted for observed differences in sociodemographics, comorbidities, and treatment exposures, yielding 335 matched pairs. The primary outcome was all-cause mortality within 30 days. Statistical significance was set at p< 0.05.

Results: Among 11,630 patients, most were Black/African-American (62.8%) and not Hispanic/Latino (55.4%). The PC cohort (n=350) was older (mean age 57.4 vs 35.2 years, p< 0.001) and predominantly White (52.6%), with significantly higher burden of major comorbidities compared to the cohort without PC (n=11,280). Black/African-American patients were less likely to receive PC (32.6% vs 64.8%, p< 0.001). A higher proportion of males received PC compared to females (p=0.027). After matching, 30-day mortality was higher in the PC cohort (RR 9.425, p< 0.0001). Kaplan–Meier analysis demonstrated lower 30-day survival probability in the PC cohort (66.2% vs 96.3%; log-rank p< 0.001).

Conclusion: PC is underutilized in adults with vaso-occlusive complications of HbSS, and predominantly offered to older, White males with significant comorbidities; Black/African-American patients remain underrepresented. Higher 30-day mortality among PC recipients may reflect late-stage referrals, advanced illness severity, significant comorbidities, or differences in end-of-life care. These findings underscore the need to address systemic inequities, develop standardized referral pathways, and study whether early PC integration may improve outcomes in patients with HbSS.

References: 1. GBD 2021 Sickle Cell Disease Collaborators. Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: A systematic analysis from the global burden of disease study 2021. Lancet Haematol. 2023;10(8):e585-e599.